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Cerebral palsy diplegia and developmental behaviour issues

JohannahJohannah Member Posts: 5 Listener
My daughter is 16, has cerebral palsy diplegia (using a k-walker for mobility), and has now self-referred as on the autistic apectrum. She has attended mainstream school and attained very well in her GCSE's, but has now hit a crisis with A levels, as she does not have the mental speed and flexibility to keep up. When her rules and capacity for ordered thinking is challenged, she goes into a panic state which often reaches a peak in screaming and self-harm. I could go on, but I would like to know if there's anyone else with similar experiences.

Replies

  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Hi @Johannah I have moved your post to the Ask a Behaviour advisor section so hope that @will22 will be able to offer some support.
    Scope
    Senior online community officer
  • JohannahJohannah Member Posts: 5 Listener
    Ok, thanks Sam : )
  • will22will22 Member Posts: 31
    Hi @Johannah 

    Can you give me just a little more info. When you say self-refereed as on the autistic spectrum is this to say that she believe she is autistic but does not have a diagnosis? 

    Can you give me an example of the kind of tasks/activity that she struggles with and one that she does well at? 


  • JohannahJohannah Member Posts: 5 Listener
    Hi Will,
    Yes, my daughter reckons she's on the autistic spectrum, having researched it online and discovered a community of the 'neurologically diverse' that she seems to relate with. She will, finally, receive a diagnosis appointment at the end of February, though I'm not sure how much of a 'fair test' this will be! She may be right, or she may just be expressing the effects of CP and a challenging self-image.
    She finds the sequencing of multiple physical tasks difficult; I tend to see that as in line with her physical limitations, but she would see this as dyspraxia or ASD. She is very controlling and easily upset by changes in her room and routine, and often by any unplanned innovation or request, and the pressure of time can make her very anxious, to the point of losing control. This has developed over the last few years to a chronic condition, and school pressures added to this behaviour. Taking on new experiences and skills, i.e. using public transport, doing her own laundry, GAINING INDEPENDENCE is fended off.
    Educationally, she says she was able to succeed at GCSE's because she can learn rules and facts and parrot them on request, but the leap to A Level work entailed teachers offering a number of possible routes to solving problems to which she felt unable to determine how to make the correct choices - she hates choices! She's also very perfectionist, and hates to compromise or adjust to variable circumstances - she lives by self-imposed rules. Consequently, she gives herself a very hard time.  She's found it hard to make friends with her peers at school, and it seems to me that she has probably become over-invested in her academic ability at the cost of valuing herself in other ways, where she perhaps feels more limited by her physical disability. She's made computers her speciality, but I do wonder if this isn't down to a lack of alternatives. She has a witty sense of humour and is extremely affectionate with me, and to some extent, her two girl friends. 

    Johannah
     
  • will22will22 Member Posts: 31
    Johannah,

    apologies for the delay in getting back to you, I've been away for a while.

    Whether or not there is a diagnosis of asd here is beneficial but not essential as you have some clear understanding of what your daughters difficulties are. Unfortunately the difficulties are going to become more pronounced as she moves away from structured rote type learning into areas where there is more ambiguity and the evidence of learning is more focused on constructing an argument rather than a discrete right/wrong answer (the much hated essay). 

    This is to a degree unavoidable unless she's working in a field that is more linear (computer work would seem intuitively to me to fit this bracket). 

    rather than trying to overcome the mountain of how to break down her a-level type learning into her preferred mode of learning, perhaps its better to focus on her learning how to cope when things go wrong or when they do not work out her way. Her experience of moving into a level territory is the start of her moving into more a more adult world where things are not so neatly put out and ambiguity/conflict is more common.

    What is her insight into things going wrong or not being able to do something? can she reflect on her experience of a levels and her own rules? The key here will be providing her with a defined pathway out of situations that she cannot resolve by her own rules. A good analogy would actually be like computer code where she needs an instruction to follow to prevent a 'crash'.
  • JohannahJohannah Member Posts: 5 Listener
    Thank you, Will, for your thorough and helpful reply. Since I first posted my daughter has indeed been diagnosed with ASD (high functioning/Aspergers), which has certainly helped me understand and accept her behaviour better, and, consequently, our relationship. I hope that now we will be able to access appropriate help in supporting my daughter to manage the challenges of adult life that are increasingly making their presence felt. 
    Absolutely - my focus certainly is on her learning how to cope when things go 'wrong', and, indeed, on challenging such a judgemental view of events, and I'm hoping a CBT approach might help this process. I try to diffuse the frustrated emotion and lead her through a step-by-step reasoning approach to the issue to debunk her catastrophic thinking, which sometimes works if I get in early enough! There's lots of work to do, but at least we now have a better understanding of where we are. I will pass on your computer code analogy which I'm sure she will get. 
  • JohannahJohannah Member Posts: 5 Listener
    Thanks, Will, for your thorough and helpful reply. Since I last posted my daughter has indeed been diagnosed with ASD (high functioning/Aspergers), which has helped me to understand and accept her behaviour better and improve our relationship. 
    Absolutely - my focus is on her learning how to cope when things go 'wrong', and in dismantling this judgemental view which informs her catastrophic thinking on seemingly trivial events and choices. I am hoping that the diagnosis will lead us to some useful support that can help with this, perhaps in the form of CBT, as well as some social skills awareness training to extend her capacity for making new relationships. I understand that there are some schemes that can be initiated in schools to provide interventions and peer support to this end. So far, my daughter has pretty much sat in the SEN room every lunchtime which has done nothing for her social inclusion. If you know of any such material/strategies developed for schools please let me know.
    I will pass on your computer analogy to my daughter which I know she will get.
  • will22will22 Member Posts: 31
    Johannah,

    I'm glad you have a diagnosis and that this is a positive thing for you. CBT is something I have made use of in altered/amended forms for individuals who have insight into their own difficulties. learning to spot the physical changes that come along with the build up of stress and then learning an appropriate outcome can be of great help. 

    Regarding school, provision for ASD in schools can vary wildly. A scenario where someone is away from others can be very beneficial if being around others is not desired and thoroughly stressful, but can become an issue of isolation and habitual avoidance if left unchecked. If your daughter wishes to be around others then there are some strategies that can help her manage this, but if she doesn't wish to then those need should be respected. This is a scenario I have commonly when we take in residential students with ASD. Parents are desperate for them to become social, but thrusting someone with social difficulties into social spaces leads to great stress. Hopefully you can work with your school to find a way to give her the tools and strategies she needs without putting her under too much stress.

    What school should be doing is assessing her needs and providing her with as much support as they are able. Since the diagnosis have they made any changes to her teaching or the support they provide? if they do not have the info they need to make changes/offer support then linking up with the national autistic society may be beneficial to provide training for them. 
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